Melanie Kozak: My PH Story

December 06,2017

I was diagnosed with Pulmonary Hypertension in 1998 when I was 22 years old. It took an entire year and nine seizures for them to figure out what was wrong with me. Doctors told me I was crazy and making myself have grand mal seizures. I knew they were wrong, but it still took so long to get diagnosed.

My pressures were high and my PH specialist said 6 more months and I would have died. It was 1998 and Flolan was the only FDA approved treatment. I did however get to go on calcium channel blockers, which worked for a few years. I had to drop out of my senior year of college. I did go back and finish because I decided that PH wouldn’t define me or what I was able to do.

I went to work full time for 15 years with PH. I met my husband and got married. He learned how to mix cassettes so I’d get a break from doing it. We have traveled all over! We’ve been on cruises, flown all over the country and to Bermuda. We don’t let PH stop us. We have chosen to live life to the fullest and enjoy every minute of it.

About five years ago I had to go on disability. I live in New Jersey with my husband and dog. I’m on IV Remodulin, Revatio, and Opsumit. I’ve been on almost every medication that is now approved for PH. I’ve also been in a clinical drug trial. I’ve traveled throughout the US to get the best care for my illness. I’m actually pretty stable now on my medications.

I’ve been lucky enough to see all these new PH medicines get approved and I’ve been able to see so much research take place. It really makes me grateful for all the people involved in helping to raise awareness and funds to help us get closer to a cure.

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